[quote=Cheryld]Wow... I am very surprised with 4 nodes involved that they did not give you chemo as well as rads!!! Let me first say that. I gather based on your description of the surgery that they only removed as small amount. Ideally - they should have removed more. But this is all unimportant now. The surgery you had was what I had. I lost 1/3-1/2 of my tongue - they grafted from my wrist. Believe it or not recovering from surgery was easier than recovering from rads. That said it will take longer to heal now that you've been radiated. Get as MUCH PROTEIN as possible to help you heal. I don't mean steaks or the like. Protein shakes, will help. Ask them if they did full radiation to your mouth. I am wondering if they only did your neck and didn't concentrate so much on the mouth assuming they had gotten it all. In medical lingo, a recurrence this soon after surgery isn't really a recurrence, truth be told it they didn't get it all in the first place (that's a quote from an oncologist)
Best of luck. The trache sucks so bad (not gonna lie) so I hear you. And suctioning BITES in a big way. But it should only be for a short while so hopefully by day 3 or 4 post op, it will be gone.
Hugs. [/quote]

yea the first surgery we were told that they took enough of the tongue that they had all negative margins�...when we met with the chemo part of the team after the first neck dissection he pushed for 100 percent radiation for sure�and he said he would sit there for days to convince me to get it if i didn't and that was the chemo guy talking positively about radiation �.he spoke of chemo and described it a certain way where it wasn't 100 percent supported to benefit the results based on how the cancer looked in the lymph nodes, etc etc�..so we went with accelerated radiation five times a week but twice on wednesdays to the whole mouth and neck but with more emphasis on the left side...the tumor is in almost the same spot but it is bigger than the last one so with this new surgery hopefully it will be allll gone, fingers and toes and families fingers and toes are crossed as well haha�and possible chemo after depending on certain circumstances�..

had a set back the other day which wasn't good�since the new tumor arrived back in november �..the neck had gotten a lot of referred pain and stiffness also the tongue started getting swollen��well on friday night neck started welling up a lot and so did the tongue making the airways narrow and hard to breathe laying down�went to the ER and had a little bacterial infection in the mouth�.they transferred me to the hospital where the surgery is going to be and am now on some steroids and antibiotics�.swelling has gone down and back to the really stiff neck and not eating or drinking like its been for the last month(eating by only) but the pain is manageable�so I'm already pretty much moved into the hospital for after the surgery�like isn't it nice of my landlords to let us move in a few days before move in date! lucky lucky


i wish i could practice the trachea tube�..ugh its almost amusing to me that THAT is whats bothering me the most out of this upcoming procedure�.anyways hope everyone else is having a great day!